Apple's iPad: Year One Video • (Leo & me at 0:55)

1.28.2011

It took investigative reporter Seth Mnookin three years of ten-to-twelve hour days to research and write The Panic Virus, his new book on the roots, flowering, and rotten fruit of our culture's anti-vaccine fears -- so this review and my interview with Seth at The Thinking Person's Guide to Autism couldn't possibly cover everything Seth has to share and that you need to know. If you're short on time, read The Panic Virus's harrowing first five pages, in which an intentionally unvaccinated child nears death from the vaccine-preventable disease Hib. And in my opinion the first 20 pages, which map out misinformation-based vaccine fears' rise and consequences, should be shared by every pediatrician in the country (if you have an iPad, you can download The Panic Virus's first section as a free preview).

Why did our culture fall so hard for vaccine misinformation? Why did that misinformation proliferate? Mr. Mnookin blames the media, for fanning vaccine fear flames without bothering to determine the fire's source. For allowing celebrities to showcase false minority viewpoints as unchallenged truths. As E.B. White's Charlotte the Spider said, "People believe almost anything they see in print," and her statement can be upgraded to "anything they see on TV" as well. Gullibility regarding media is more pervasive than you might think; when I talked with AAP spokesperson Dr. Ari Brown, she said that even grandparents who have seen the effects of vaccine-preventable diseases first hand place faith in what Oprah and her guests say over their own experience.

Unsurprisingly, Mr. Mnookin blames the Internet, too. As he writes,

"The anonymity and lack of friction inherent in the online world also mean that a small number of committed activists -- or even an especially zealous individual -- can create the impression that a fringe viewpoint has broad support." [p.198]

There's also our culture's lack of scientific curiosity. Mr. Mnookin takes great care to point out how writers like David Kirby, author of the information-warping mercury-causes-autism book Evidence of Harm, have taken advantage of a cultural willingness take accusations at face value. Kirby exploited the fact that though no legitimate study has ever found a causal link between vaccines and autism, it is also not scientifically possible to prove that vaccines don't cause autism, just as it is impossible to prove that anything is completely safe. Kirby milked that scientific impossibility, cherry-picked quotes out of context, included whatever statements fit his message and ignore any evidence that didn't -- and patchworked it all into a lumbering Frankenstein of persuasive misinformation. Reading exactly how Kirby perverted the facts in writing Evidence of Harm should give anyone pause.

Then there are the Wakefield denialists. The anti-vaccination blogs and believers still cry "Offit makes money off Rotavirus!" while lionizing Wakefield as their children's savior, even though, in Mnookin's examination of Brian Deer's 2004 The (London) Times series investigating Wakefield,

"Wakefield had not been a disinterested clinician while preparing his Lancet paper condemning the MMR vaccine; instead, he'd received multiple payments to examine children as part of a lawsuit that was being prepared against drug manufacturers. What's more, almost half of the twelve children in his study had been funneled to Wakefield by Richard Barr, the class action lawyer representing parents convinced that vaccines had injured their children. The most shocking revelation came later that year when Deer reported that shortly before his piece in The Lancet was published, Wakefield had filed a patent for a measles vaccine that could be administered independently of those for mumps and rubella -- which was just the product parents would be clamoring for if they became convinced that the MMR vaccine was more than their children's bodies could handle." [p. 236]

I've never seen anyone from the autism anti-vaccination movement address these concerns, other than to say that some of the twelve children's parents still support Wakefield. Yes, well. In writing about Rochelle Poulter, the parent of "Child 12" who was asked not by Wakefield lawyers but by the prosecution to testify at Wakefield's "Fitness to Practice" GMC hearing, Mnookin writes,

"When the GMC ruled that Wakefield's actions had been 'contrary to the clinical interests of Child 12,' Rochelle Poulter was aghast. 'I insisted that the hearing be informed that I was completely happy with the treatment my son had received and that I did not have any complaint against any of the doctors,' she wrote in testimonial of her support. 'To this day I do not really know why I was asked to attend and give evidence.' Her confusion was typical of the willful incomprehension of Wakefield's supporters: As long as they had no grievance with Wakefield's methods, they felt any ethical violations he had committed in the course of treating their children should be ignored." [p. 301]

Does this mean Mnookin thinks those who demonize vaccinations are stupid? No. He shows sincere empathy for other parents (he's a recent father), noting that "it's hard to unscare people." But he also doesn't flinch when describing how parents who have truly fallen for the anti-vaccine party line stay on message even when faced with contradictory evidence. The Cedillos, Wakefield devotees whose daughter Michelle was the first test case for the Autism Omnibus (vaccine injury) proceedings, refused to accept that Michelle's own medical records -- as examined during those hearings -- showed autism symptoms from infancy. (In our interview, Mr. Mnookin and I discussed how the Cedillos desperately needed tangible support -- and how Wakefield and his supporters gave it to them. This speaks to a greater need for support services for families of children with severe autism and comorbid conditions.)

"...anyone who repeats this lie [“It’s been asked and answered, vaccines don’t cause autism.”] is immediately my enemy. I mean that, I really do, because there are just too many kids in the mix and this is just too important and if you are either intellectually too lazy or too dishonest to understand the science around vaccines and autism, then, well, you are my enemy. Sorry, it’s a hard knock life."

Whereas Mr. Mnookin spent years researching and subtantiating his statements, Mr. Handley hurls insults at anyone who disagrees with his time-and-again debunked "evidence." I'd remind Mr. Handley that, as E.B. White also wrote, "One of the most time-consuming things is to have an enemy," and that his considerable energies could serve our community best in positive ways, perhaps helping to found support networks for all people with autism in need, not just those whose parents agree with him.

"So essentially Wakefield wants to use the Somali kids as more guinea pigs – as he did in his Lancet study – with the unproven and potentially dangerous therapy of hyperbaric chamber treatment for autism. According to the newspaper clipping, many parents have already signed up. And why wouldn’t they. There is no cure for autism, we don’t even know yet what combination of factors cause it. So of course desperate and vulnerable parents are only willing to agree to participate, even if it potentially puts their kids’ health at risk and in the knowledge that Wakefield is a fraud." -Maggie, at The Skeptic's Book of Pooh-Pooh

1.25.2011

If you achieve the same alchemy I did, this meal will make you weep with joy. Prep and cooking were made even easier by the right equipment -- a razor-sharp ceramic knife (birthday gift), a well-seasoned cast iron skillet (inherited), and an Italian pasta pot (the kind with the strainer inside the pot, gift from my brother when he lived in Vicenza). An efficient setup means less to clean up afterward -- but anyone you invite to eat this will be in your thrall, so you can always command them to do the dishes.

In a heavy skillet, cook bacon low and slow until crispy but not burnt. Turn off heat.

Set bacon aside on grease-absorbing substrate of choice.

Leave skillet with bacon grease and drippings on stove. You'll come back to it.

Start heating pasta water.

Melt the butter in a separate, non-bacony skillet over medium high heat.

Add the mushrooms and the onion to the skillet. Sauté over medium-high heat until the mushrooms begin to brown and most of the liquid has reduced (~10 minutes).

Add dried pasta to boiling pasta water.

Add the cream and brandy to the mushrooms, then whisk in the chicken stock.

Boil this mixture until thickened almost to a sauce consistency, about 8 minutes.

Strain cooked pasta and place in large serving bowl. If you cooked it in an Italian pasta pot, put the strainer back in the water and keep it on simmer. If not, bring another pasta-pot sized batch of water to boil.

Toss pasta with cream sauce. Season to taste with salt and freshly-ground pepper.

Crumble bacon and sprinkle over top of pasta, followed by parsley.

Turn heat for bacon-grease-and-drippings-holding skillet back on, to medium

Put collards in boiling water to blanch (30 seconds at most)

Strain collards, place in bacon-drippings skillet and toss, scraping pan to lightly coat with bacon bits and drippings (you might need to remove some of the grease beforehand).

1.23.2011

Instead of making folks ferret out multiple posts for apps info, I've put together a categorized spreadsheet of iPad apps for people with autism -- the ones that work for Leo, yes, but eventually lots of other apps as well.

The spreadsheet includes the apps I've reviewed on this site and on BlogHer so far -- with prices, iTunes links to full and lite (free) versions, and review URLs when available. The spreadsheet will be updated frequently, as our apps backlog is burgeoning and many reviews are forthcoming. So save the spreadsheet URL [http://is.gd/12ygv8] or this post's URL!

1.20.2011

A few folks have asked how we turned the Iz photo on the left into her birthday party's collaborative art mosaic on the right (which I came up with due to Iz's love of picture puzzles, a desire to have a gender-neutral 12th birthday party activity, and my inherited predisposition towards the first adjective in this post's title.)

The answer: by hand, though it didn't take that long, and even though there are likely ready-to-go programs out there that I didn't have the time or patience to uncover.

Here's the how-to. Understand that I slapped this together on the fly; work on a Mac and am disinclined to purchase software (again, see title) and so use the powerful shareware Photoshop substitute GIMP along with Preview, the simple image manipulation program that came with my computer; and that it's been about a decade since I wrote documentation.

Find the Spacing area. Click the Link icon under the Spacing type-in boxes. The link will "break."

Set the unlabeled Spacing > Units pop-up menu to "in" for inches.

If your photo is in portrait orientation, type "8" into the Spacing > Width type-in box, and "10" for the Height type-in box. If in Landscape, switch the numbers. This way every panel will fit on an 8.5" by 11" piece of printer paper.

Click the OK button.

From the View menu, choose Show Grid. The grid will appear on top of your photo.

Chop it up

From the GIMP Toolbox, choose the Rectangle Select tool.

Using the Grid as your guide, select the top left-handmost 8 inch by 10 inch panel.

Hit CTRL-C (GIMP is an X11 program, the Apple key will not work) to copy.

Select the Preview program (simpler than continuing to use and print from GIMP, IMHO).

From the File menu, choose New From Clipboard. Your copied panel will appear.

Retrieve printed panel. On its back, write the panel number and draw an arrow pointing to its top.

Work your way through the main image repeating steps 2 - 8, each time selecting a new panel and corresponding numbered file name.

If you have the time and you aren't doing this at the last possible moment and your babysitter doesn't have the flu and you aren't getting up at 6:30 AM to retrieve your cupcake chef from San Francisco, I'd recommend you tripm the white edges from each panel print for a more cohesive mosaic (or have your participants do the cutting). Not necessary, but it would have looked cleaner.

You will now have a set of 8" x 10" images that look like this:

Time to color!

I put out all sorts of coloring materials for the kids to choose from: crayons, markers, oil pastels, watercolors -- but removed the darker colors that might interfere with the lines of the drawing. I also should have recommended that the kids stick with coloring/filling in and not add patterns. You can see in the close up on the left that the grid pattern one child drew obscured what turned out to be the mushroom's stem.

Each child also signed their name on the back, making the mosaic a keepsake for Iz.

After everyone finished, I affixed the panels to the wall with UHU Tac removable adhesive putty, arranging them via the numbers and arrows on the panels' reverses. This way we can relocate the mosaic without any tearing.

I think that's it. Any questions? It's not as complicated as this makes it sound, honest.

1.19.2011

Tonight Iz and I went to our beloved Isotope Comics for Buffy Summers' 30th birthday celebration (thank you GeekGirlCon!). We didn't stay for the Once More With Feeling Karaoke as we were already comproming Iz's school night bed time, but we did get to check out some slayeriffic cupcakes from the onsite contest (and Mali drew her own Slayer scenarios but insisted I give them to Isotope's proprietor and I forgot to scan them first). Our favorite cupcakes were in the graveyard tableau above.

Other selections (click pix to enlarge):

Zombie Flesh 'Cake

The "Cup-Stake"

"Bitten" cupcake

Vampire Repellent Cupcake (w/garlic whipped cream!)

And, despite my half-hearted promise to myself to resist buying anything ... I simply had to have Marvel's new all-women-created Girl Comics collection, as our own dear Lea Hernandez has a Wolverine story therein. Girl Comics is so cool that it may replace Seth Mnookin's The Panic Virus as my under-the-pillow book.

Mali created her own PowerPuff girls battle after seeing two episodes and deciding that they are her new heroes. She says she created these villains, the Angry Clouds. I'm loving the detail and variety, especially the different clouds (click to enlarge). Also love having a self-directed kid who is perfectly happy spending hours with a pen and a piece of paper and her imagination.

1.15.2011

Our Iz is going to be twelve tomorrow. I'm not sure how we're even supposed to conceptualize that.

This is what she looked like the month before I started this blog. She was four and couldn't have been more scrumptious.

Here is what she looks like now, and if you can identify the mushroom she's holding, I'll send you its spore print:

More than anything, more than a hair straightener or new Astonishing X-Men comic, she wanted her birthday to feature Maria's edible rainbow cupcakes. But I am lazy awful mom and didn't want to deal with a straightforward yet logistically complicated recipe, so I did something slightly evil. I suggested she ask her Godfather Michael, who has publicly expressed his disdain for cupcakes, if he would bake them with her. Her indulgent godfather said Yes! I cackled, and scheduled the party for today.

See how much fun she's having? Much more fun than if I had been in charge, grumpily barking out orders in reluctant Kitchen Commander mode.

The girls and Michael did all sorts of batter layering and patterning experiments.

Michael may not like cupcakes, but once he gave his word, he was committed to excellence. Note look of professional concern.

They were awesome! Michael, Iz, Mali, and Iz's friend Clarice made cream cheese frosting, because we're always looking for an excuse. If you ever hesitates on a frosting decision within earshot, you will get strong-armed into a cream cheese option. Consider yourself warned.

The final onsite party event was a collaborative mosaic. The kids were given individual panels to decorate however they liked -- panels that looked quite random individually. It wasn't until we put them together that everyone recognized the picture of Iz (the 'shroom pic from above). Iz and her friends got a real kick out of the whole process, which was a relief as I am all about the cheap homespun fun. I don't think they noticed they were having cheap homespun fun.

And then Jennyalice, Ep's husband Clyde, and I took Iz and ten friends to see the Green Hornet which was as witty and amusing as io9 promised but also remorselessly, thoughtlessly violent thought I might not be the best judge as shepherding those kids -- who are good, obedient kids but also top-volume human ping-pong balls -- brought me as close to a panic attack as I've been in years. But I would still do it all over again. Because Iz said it was a fantastic day. And that was the goal.

Happy birthday, amazing girl.

(And because I am her mom I have to crow that she won the middle school spelling bee and no she is not in the oldest grade in her school. And that her prize was a language course and she chose Latin. And that I think she's just great. Really great. Proud to be her mom on so many levels.)

1.14.2011

Here is one way Leo survived our holiday road trip: By clinging to the familiar. Through his increasing awareness that, no matter where we go, there will always be things he likes to do (*cough* iPad *cough*), food he likes to eat, and people he likes to see. It helps that we drove the family truckster, which meant that his favorite seat, family, music, books, and other nesting materials came along, too. Other examples of the emerging familiar:

We drove through traffic-stopping rain- and hailstorms on I-15 south of Las Vegas. As we approached Primm, Nevada (formerly Stateline, and a fine town with an interesting history), the flooded desert floor reflected lights from the casinos, malls, and hotels and evoked the bath house from Spirited Away. You'd better believe Leo and our whole family liked that. Quite comforting.

We stopped in Primm and had our very first full-family mall experience at Las Vegas Outlets (we usually avoid malls: I loathe them, Seymour's not a huge fan, Leo and Mali are indifferent, though Iz is desperate). We secured some last minute and quite reasonable holiday gifts, then hit the food court -- where Leelo nommed an entire spinach stromboli! The not-insubstantial serving of greens was encased in pizza dough, and were transformed into the familiar. We just might balance our boy's diet through food on hand rather than with supplements and smoothies!

Nothing beats a swimming an opportunity for our boy (getting his goggles on, with his dad). Can you see The Strip in the background? We are so grateful to Seymour's parents for choosing a house with a pool.

Our stay in Las Vegas was brief but, again, a success. Leo has gotten used to the idea that his beloved grandparents' "new" (as of 2007) house is where they live, and now that welcoming, wonderful home has become the familiar as well. And whenever he became dissatisfied with our arrangements in Phoenix, it was "Grammie and Vavo's house?" that he would request, not our own "New house?"

I am looking forward to our next road trip -- and hope that we can eventually take these children to Yellowstone. That is my ultimate family road trip destination.

I wrote another recent piece for BlogHer, titled Get Over Yourself (this post was supposed to be my 2011 year-opener, but Wakefield's latest public shaming took precedence):

I'm not greeting the new year with resolutions; I'm greeting it with a wish: I want you to get over yourself. Scratch that: I want you to give yourself permission to get over yourself. To put your defensiveness, anxiety, and hesitation aside, so you can engage more honestly and productively with the world around you, and we can all be happier.

Our engagements may not always succeed, our minds may not always meet; but we should always try.

On Tuesday I was interviewed about Blogging! along with NerdyAppleBottom, on Kansas City's NPR station, KCUR.org, as part of the news magazine Central Standard. NerdyAppleBottom's entertaining interview regarding her unexpectedly viral post My Son Is Gay is the first part, I come in at the :40 mark to discuss how blogging has affected my life -- specifically, how all you wonderful positive role models have taught me to stop taking the negative approach of "fighting autism," and the positive approach of supporting my son. Thank you.

One of my paid jobs is reviewing blogs. I have a large weekly rotation of sites, and while I don't identify with the interests of all of the writers (euphemism alert), some of the blogs are a distinct pleasure to read every week. I was shocked to read that one of my favorite bloggers, Ashleigh Burroughs, was shot alongside Rep. Gabrielle Giffords. I adore Ashleigh's humorous, no-nonsense, empathetic approach to life, politics, and her own history. If you have a moment, please leave a supportive comment.

And finally, breaking news: It took the hot social media trends of 2008 almost two years to wear me down but: I now have a public Facebook page. Check it out, baby.

1.10.2011

Two of the most beloved elements of Leo's life collided this weekend: I was asked to give a public talk for Via Services, the organization that runs Leo's camp Via West -- all about iPads. Turns out that the camp director had read the SF Weekly article about our boy and his iPad, and was inspired not only to try to integrate the devices into the camping programs, but to educate our community on just what iPads can do for kids and adults with special needs. And that is how I ended up standing in front of 150 people, telling them which apps Leo likes and why, what a life-quality change the iPad has brought about for our boy, and also about alternative iPad funding options.

Danielle Samson, a superbly talented local SLP and iPad enthusiast who was interviewed with me on Comcast Upside a few months ago, actually gave the bulk of the talk, and joked ahead of time that she's going to start printing tour t-shirts as her iPad and AAC expertise has been in such demand. I believe it; she was intelligent, encyclopedically informed, and entertaining. The audience remained attentive and engaged for almost three hours, with questions interspersed. Here are some of the points we talked about, both in the moment and with parents/professionals afterward:

IPads aren't for everyone. It's important to do an AAC evaluation to see if the device is compatible with your child's needs and abilities. Danielle discussed the SETT framework.

It's important to try out an iPad before buying one. If you don't know someone who has one, call an Apple store and ask when their slow times are, and bring your child by then. And it doesn't hurt to ask if the store will let you come in 15 minutes early, before other customers arrive.

Anecdotal information about the wonders of iPads is great, but until we have research and evidence backing up iPads for education and as AAC devices, school districts are unlikely to fund them.

Buying a 3G iPad doesn't commit you to the network -- it gives you the option to buy the subscription by month, which is a nice backup if you intend to do any traveling. The wifi still works, of course.

Safety/Monitoring: Make sure you're familiar with the Restrictions options in your iPad's Settings, so you can hide YouTube and Safari if need be, and turn off the Delete Apps function -- I know Leo has certainly accidentally deleted an app or two (thankfully, I had them backed up on my computer).

We also discussed apps, of course. I told them about my two current recommendation lists:

Danielle also discussed the differences between the AAC apps ProloQuo2Go and Tap2Talk. Both have their own customizable features, but the first is a one-time $189 fee, whereas Tap2Talk is free, but then requires a $99/year subscription for any but the most basic functionality. Both are highly customizable, but in different ways.

We also both wished that there were more Language (as opposed to Communication apps), as well as more options in the Visual Schedule category.

After the talk, I was inspired by Danielle's apps recommendations and also did some digging of my own, and discovered some new apps that Leo likes:

US Puzzle Map ($2.99) Lets my puzzle-loving boy indulge in his love of puzzles while his Geography-loving mom looks on and beams. It also says the name of each state out loud when you touch it to drag it into place, so Leo can learn the states' names independently without having to read them. Play with state outlines in place, or without.

NeoPaul and NeoKate (Free) Natural sounding text-to-speech. You can save your efforts in a list, which I suspect Leo will like -- he's still working on reading, but he can associate a unique visual element with its content. We'll be able to come up with a stock list of phrases for him to use.

Speech With Milo: Verbs* ($2.99) Hurrah! A language app! Milo the cute animated mouse physically demonstrates the verbs in question when you tap on him, then you tap on him again, a sentence appears with the verb in context. All verbs and sentences are also read aloud. This will be very helpful for our boy.

SoundTouch ($2.99, Lite Version) Touch cartoons of animals, vehicles, instruments, etc. and see different real-life photos and sounds. Leo went nuts over this app, to the point where I couldn't get him to go to bed, and he carried it around the house with him, trying to play it as he walked (he's never done that before).

Arithmaroo ($1.99) Very excited to find Arithmaroo! It is the only app I've found that focuses on making the user associate numbers with amounts, which is where Leo needs help.

Dot to Dot Number Whiz ($1.99, Lite Version) Leo loves dot-to-dots. This one also guides him through by flashing the next dot, and reciting the numbers along the way to reinforce his counting skills.

Here's Leo playing Dot to Dot Number Whiz. Notice how he switches hands between turns! Ambidextrousness is not necessarily a great thing in kids with special needs, so I'll also be sending this video to his OT:

The Monster at the End of This Book ($4.99, though currently on sale for .99) Our entire family already loved this book -- now Leo can not only "read" it independently, and the animation is fantastic. The best interactive book I've seen on the iPad, so far.

1.02.2011

He also loves his rough-housing uncles, his big cousin Nicole, his Grammie and Vavo, his big sister, his dad, and his aunties. That is one thing our extended family holiday trip proved -- whatever social challenges Leo may face, he has no problem expressing affection and delight towards the important big people in his life. OK, so he still wants to squash the littler kids -- but they are loud and unpredictable. I'm sure he'll like them when they're wrestling-size, too.

1.01.2011

We just returned from a near-two-week road trip through Hanford CA, Las Vegas, Phoenix, Joshua Tree NP, and Palm Springs -- arriving home last night at 2 AM. I was worried worried worried about this trip and how it would affect our boy, as documented thoroughly at BlogHer.

Turns out Leo is a world-champion roadtripper. The best possible sport, much better than his Bickerson sisters. If you follow me on Twitter you already know that our holiday peregrinations weren't all sandstone and roses -- but the roadtrip segments were such a delight that we're thinking this might be an ideal vacation mode for our family.

Meanwhile the kids finally opened the presents under their own Christmas tree this morning, the lucky little bandits. And even though they received some teeth-gritting gifts, I am also secretly pleased that Jennyalice and my sister-in-law Bree love my children more than they fear my wrath.